NOVEMBER 27, 2013
President Obama has SIGNED the NPRNA into law! We are incredibly excited about what this means for SMA research and our ability to reach a treatmentand/or a cure. THANK YOU to all of our friends who sent letters to their Representatives to help get this bill passed!!
For more into read the Q&A on FightSMA’s website to learn more about the bill, how it relates to SMA and what happens next visit: http://www.fightsma.org/blog/nprna/qa-the-national-pediatric-research-network-act-and-the-sma-community/
Chairman Upton commented, “At long last we are nearing the finish line, and we will soon have a network in place to help families like the Kennedys in Mattawan, Michigan, and their two young daughters who have the rare disease Spinal Muscular Atrophy. These two little angels, Brooke and Brielle, are little warriors in the effort to boost research for rare diseases and serve as an inspiration for all.” - See more at: http://energycommerce.house.gov/press-release/bill-help-children-rare-diseases-kennedy-girls-sw-michigan-now-one-step-closer-becoming-law#sthash.vh3lgboY.dpuf